Today: T+49

49 days post transplant and Seth is doing ok really. Better than expected which is great!!! It’s June and we are halfway through 2015.

I have had a bit of time at home the last week as Hugo has had a cough and I had to return to the dentist (joy!). This was hard leaving Seth, but Hugo thrived. It made me realise how much this effects him as well as Seth. He is only a baby but he has loved seeing my best friends little boy this week (who is 2 weeks younger than Hugo). It got me thinking about what this year should have been. I should have been on maternity leave at home, taking my new baby to baby groups, meeting my friends and spending time helping our new baby grow and become part of our family.

Instead, we have spent the first half of this year giving Seth a chance. So I think it is maternity leave time well spent. Hurrah to the first half of 2015.

In himself, Seth is doing great. He is full of energy jumping all over daddy. It is clear he has a bit of cabin fever – in that he is bored of being in his hospital room for most of the day. He has time in the physiotherapy gym for 3 half hour sessions a week which he absolutely loves. We also get out to the park and make boats to race on the water.

Ryder had a hickman line fitted this week. Doctor Seth checked his bloods – all with a sterilise field and alcohol wipes – ‘got to be clean daddy’.

Walking the ‘snake’ in physiotherapy

  

One of Seth’s favourite physiotherapy exercises – racing to move the beanbag animals from one place to another faster than daddy or mummy!

Today we went out for the longest time yet, about 2 and a half hours and we went to walk around the fair ground that has been set up. Seth loves looking at it (he cannot go on!!) and he keeps talking about how when he is better he is going to go on the fair. He has also become interested in a skate park that we pass everyday and is saying he wants to ride his scooter on it.

Greating Grandma speeding ahead on his scooter. He had not seen her since transplant when the chemo was making him feel pretty ill. So he did not speak to her.

It is so great to see him how he is at the moment. So full of life. He has always been a happy, smiling boy, but he has never quite been a cheeky child of his age. Until now. I sometimes find my self watching him and smiling that finally I am seeing a child emerge.

Hugo learning about Seth’s face – through a protective rain cover…

Infections:

At the moment Seth is testing positive for Noro Virus,  Adeno Virus and the Human Herpes Virus 6. He has been on treatment for the HHV6 infection for 2 weeks, initially the virus went from 10 to the 5 in the blood to 10 to the 3, but it has now gone back up to 10 to the 6. There is an alternative treatment which also treats Adeno virus which he is now on. This is a once a week treatment to start with and will then drop to once a fortnight. The positive thing is that at the moment he is not showing any signs of illness. No temperature’s or feeling unwell! – yey!! He is vomiting every day, this is usually just once a day and we are not sure which is causing it. It could be the mentioned virus’ or low tolerance for milk feeds. But it is not significant so at the moment we are just monitoring it.

Hands:

Look at these bad boys! No more bandages. He has better movement in his fingers that he had before because the skin is not thickened from GVHD. At the moment his old damaged nails are growing out and new nails are coming through. This is common as when you are really ill the body stops doing things that are not totally necessary – like growing nails.

       At the moment Seth is still needing platelet and blood transfusions, but these are at the moment getting less frequent. I don’t want to get ahead of myself, but, I would love for a time to come where he does not need them again. He has been having 3 or 4 weekly blood transfusions since September 2014 and platelet transfusions since October/November at a similar rate.

So, things have changed so much in the last 6 months – surely as a BMT parent 49 days after transplant I can start to relax right?! Well, maybe not quite – I have graphs so I can see any trends or changes in his stool output, Red Blood Cell level, Platelet Level and Neutrophil levels. This is probably not necessary – but as I have said before you are sometimes armed with too much information. I have really found the graphs helpful for me to see the overall picture, rather than panicking because his neutrophils have dropped two days in a row, or he is still needing blood transfusions.

At the minute I feel a bit like we are sat waiting for a train that we don’t know where it’s going. We have a few virus’, we have a little bit go GVHD, we don’t know if the Thymus is working or not. Only time will tell on these. Today, these problems look like they are being managed….but, what will tomorrow bring?

Don’t get complacent and take it day by day